I have tried methylation protocol off and on for a year. But couldnt get energy or the right effect.
I went up and down on dose, went off of it for months to clear out, I think it just takes time
and getting dose right. was I methyltrapped, was I paradoxical deficient, yadda yadda.
I couldnt figure it out and couldnt resolved it.
I gave up on it many times. I think my body just needed to heal over
time and taking a break from it for months helped alot. I think the current mindset is to just
plow through the bad times, but something has happened after taking a break for a while
and restarting. It allowed my body to catch up and detox and heal. I tried for months to
keep taking it, try escalating the dose and lowering the dose, keep detoxing etc. But I
couldnt make a breakthrough.
I am glad I can finally tolerate coconut oil. I have tried it on and off for years but it just made me tired and my skin would dry out like it drove me hypothyroid which it is suppose to do the opposite.
I do think that the coconut oil is being burned as energy as a MCT and bypassing some of the normal cycle that takes carbs into energy. If I miss my daily dose my energy crashes down. I also think that the coconut oil and candida killing and viral killing properties are slowly cleaning up my system and contributing to healing. But the methylation is important too. The methylfolate definitely makes an immediate difference. I take doses every couple of hours because I feel my energy dip if I go too long without it. every 4 hours at least. The TMG also helps alot I take 500mg. and feel a difference if I dont take it. I take LCF occasionally but it doesnt seem to have an immediate effect on my energy but could be contributing over time so I continue to take it. The vitamin K2 seems to have some sort of electron transport capabilities in the mitochondria according to my research and I can definitely feel the energy from it if I take it. It last 4 hours.

History -
I have been sick for 20-30 years.
I have had 10 alternative doctors over the course of 20 years.
I have issues with fatigue of course, but also
candida
brain fog
viral loads of EBV HHV-6

I have spent $40,000 on supplements.
Alot helped, but none cured.

I have tried so many therapies I cant remember.
I tried whey protein therapy, pretty bad herx did not help energy

I tried liposome glutatione, herx so bad I was disabled and caused a 5 year setback, put me in the hospital for 11 days and almost died. I think I had toxins built up so much over 20 years that had never been cleared from my cells and all of a sudden, one dose of liposome glutathione liberated some and caused my system to be overloaded.

I have tried MMS for a year, made alot of gains but didnt get energy, but no longer bed-ridden.
First dose was a half of a drop, my body went numb for an hour. Slowly went up to 6 drops
over the course of a year.

Chlorella, 1/4 of a tiny little tablet put me in bed for the day, tried to work up the dose, but
it was just too strong of a herx.

I have done 75 IV chelations. Helped alot, but did not cure.

I tried iodine therapy, helped somewhat, the dose was supposed to be 50mg. but could not get over 6mg. dose without very bad herx and had to stop.

the future plan- I have nagalase levels over 2.0 and need to start gcmaf, but have been trying to kill off as much pathogen load as I can before using coconut oil so I dont herx as bad when I start on gcmaf, I am kind of scared considering how sensitive I have been in the past like the liposome glutatione experience. I had only take 1/3 the dose and that was the only dose I took and I spent 11 days in the hospital and almost died from toxic overload.
The MMS was a half of a drop and I went numb for an hour, so I am sensitive. But I do look forward to clearing things up in my system, pathogen load. Once that is brough down, my energy should go up some more.
Also, detoxing some more, I will probably do some MSM cleanse like cheney protocol. Also some chlorella protocol like cheney recommends. I will also do some lufenuron for candida to see if I can finally eradicate that.

I have tried methylation protocol off and on for a year. But couldnt get energy or the right effect.
I went up and down on dose, went off of it for months to clear out, I think it just takes time
and getting dose right. was I methyltrapped, was I paradoxical deficient, yadda yadda.
I couldnt figure it out and couldnt resolved it.
I gave up on it many times. I think my body just needed to heal over
time and taking a break from it for months helped alot. I think the current mindset is to just
plow through the bad times, but something has happened after taking a break for a while
and restarting. It allowed my body to catch up and detox and heal. I tried for months to
keep taking it, try escalating the dose and lowering the dose, keep detoxing etc. But I
couldnt make a breakthrough.
I am glad I can finally tolerate coconut oil. I have tried it on and off for years but it just made me tired and my skin would dry out like it drove me hypothyroid which it is suppose to do the opposite.
I do think that the coconut oil is being burned as energy as a MCT and bypassing some of the normal cycle that takes carbs into energy. If I miss my daily dose my energy crashes down. I also think that the coconut oil and candida killing and viral killing properties are slowly cleaning up my system and contributing to healing. But the methylation is important too. The methylfolate definitely makes an immediate difference. I take doses every couple of hours because I feel my energy dip if I go too long without it. every 4 hours at least. The TMG also helps alot I take 500mg. and feel a difference if I dont take it. I take LCF occasionally but it doesnt seem to have an immediate effect on my energy but could be contributing over time so I continue to take it. The vitamin K2 seems to have some sort of electron transport capabilities in the mitochondria according to my research and I can definitely feel the energy from it if I take it. It last 4 hours.

History -
I have been sick for 20-30 years.
I have had 10 alternative doctors over the course of 20 years.
I have issues with fatigue of course, but also
candida
brain fog
viral loads of EBV HHV-6

I have spent $40,000 on supplements.
Alot helped, but none cured.

I have tried so many therapies I cant remember.
I tried whey protein therapy, pretty bad herx did not help energy

I tried liposome glutatione, herx so bad I was disabled and caused a 5 year setback, put me in the hospital for 11 days and almost died. I think I had toxins built up so much over 20 years that had never been cleared from my cells and all of a sudden, one dose of liposome glutathione liberated some and caused my system to be overloaded.

I have tried MMS for a year, made alot of gains but didnt get energy, but no longer bed-ridden.
First dose was a half of a drop, my body went numb for an hour. Slowly went up to 6 drops
over the course of a year.

Chlorella, 1/4 of a tiny little tablet put me in bed for the day, tried to work up the dose, but
it was just too strong of a herx.

I have done 75 IV chelations. Helped alot, but did not cure.

I tried iodine therapy, helped somewhat, the dose was supposed to be 50mg. but could not get over 6mg. dose without very bad herx and had to stop.

the future plan- I have nagalase levels over 2.0 and need to start gcmaf, but have been trying to kill off as much pathogen load as I can before using coconut oil so I dont herx as bad when I start on gcmaf, I am kind of scared considering how sensitive I have been in the past like the liposome glutatione experience. I had only take 1/3 the dose and that was the only dose I took and I spent 11 days in the hospital and almost died from toxic overload.
The MMS was a half of a drop and I went numb for an hour, so I am sensitive. But I do look forward to clearing things up in my system, pathogen load. Once that is brough down, my energy should go up some more.
Also, detoxing some more, I will probably do some MSM cleanse like cheney protocol. Also some chlorella protocol like cheney recommends. I will also do some lufenuron for candida to see if I can finally eradicate that.

I have been doing some methylation protocol for some years, but havn't noticed any major positive change.
I am on:
- 1 mg Mb12
- 0.8 mg methylfolate in one dose (perhaps that is the trick, to divide in several doses?)
- carnitine fumarate (1000 mg)?
- no TMG (afraid of taking it. dont recall why?)
- coQ10 100 mg
- additionnal vitamins

I took coconut oil in the past too.

It is so difficult to balance all the elements of the puzzle and see some improvement.

"Also, detoxing some more, I will probably do some MSM cleanse like cheney protocol." Could you precise how it is done ?
Thanks
Hanna

I have been doing some methylation protocol for some years, but havn't noticed any major positive change.
I am on:
- 1 mg Mb12
- 0.8 mg methylfolate in one dose (perhaps that is the trick, to divide in several doses?)
- carnitine fumarate (1000 mg)?
- no TMG (afraid of taking it. dont recall why?)
- coQ10 100 mg
- additionnal vitamins

I took coconut oil in the past too.

It is so difficult to balance all the elements of the puzzle and see some improvement.

"Also, detoxing some more, I will probably do some MSM cleanse like cheney protocol." Could you precise how it is done ?
Thanks
Hanna

Click to expand...

Have you tried to increase the dose of methylfolate up to several mg. per day ?

I may have been unclear, but I take 1mg 3 times a day so I take at least 3mg. per day. sometimes more. Also, have you done the methylation panel from vitamin diagnostics to look at how much you are methylating ? maybe this will give you a clue if you are still undermethylating. You can also do comprehensive organic acid test that can tell you alot about what is happening. Also, do you have viral loads of anything that might be sapping your energy ? Or any type of pathogen or parasite or mold toxin.

Hi Vortex, congratulations on your significant improvements! And thanks for writing out your story in detail. I've tried a number of things that you listed, including MMS, which I found quite beneficial.

My latest experiment is with liposomal Vitamin C, and was wondering if you've ever tried that or considered it. I started out way too fast at about 6-8 grams/day, and developed a huge cold (herx reaction). I backed way off, and then restarted on a much slower time table. After a few months, I'm back up to 6-8 g/day,and my body is handling it well. It gives me a bit of energy, but am hopeful it will do a lot of "house cleaning" of old debris, including various kinds of infections.

Anyway, here's a LINK to a thread I started in case you might want to explore this further. Again, congratulations on your improvements!

I have been doing some methylation protocol for some years, but havn't noticed any major positive change.
I am on:
- 1 mg Mb12
- 0.8 mg methylfolate in one dose (perhaps that is the trick, to divide in several doses?)
- carnitine fumarate (1000 mg)?
- no TMG (afraid of taking it. dont recall why?)
- coQ10 100 mg
- additionnal vitamins

I took coconut oil in the past too.

It is so difficult to balance all the elements of the puzzle and see some improvement.

"Also, detoxing some more, I will probably do some MSM cleanse like cheney protocol." Could you precise how it is done ?
Thanks
Hanna

Click to expand...

Hanna,

Methyl supplements are very beneficial for some but not all of us need methylation. Mine when tested was perfect for example despite very high fatigue - it might be it just isn't what you need. I noticed the absence of a general B complex though. Most us need at least B2 or B6 with B12. I would always take a B-complex, preferably an active one (I like jigsaw health) with B12.

Has your CQ10 always been 100mg? I found I needed to start at 100mg twice daily for about four months to get my levels back up. Are you taking lots of Vitamin C? It preserves vast numbers of antioxidants and other vitamins and helps hormone production. People vary but I need 10g/day to have an effect.

Have you had any form of tests done showing hormones, amino acids, anything else?

@vortex, great news! Congrats! It's a great feeling, for sure. Keep us posted on how you do, and please don't get discouraged if you backslide a little. I've been doing 3 steps forward and two steps back. As long as your net progress continues to be positive not negative, it's all good.

Also, just chiming in to agree with @Wayne and @Leopardtail. I've gotten a lot out of both liposomal vitamin C and upping my CoQ10 dose. I started on big doses (6000mg C and 600mg CoQ10) of them as a prophylactic measure before I had some dental surgery a couple of months ago, and that's how I realized I probably had a deficiency of both despite taking lower doses of them every day for years. I noticed a subtle, positive increase in energy immediately.

The liposomal vitamin C I have tried was from Livon, it actually doesnt absorb well for me and gives me loose stools, not from the vitamin c but I think from the phosphatidylcholine. I know some people make it with ultrasonic machines etc. but I have not tried it.

@vortex: so how did the liposomal EDTA work? I'm getting ready to do another round of chelation and would like some options for EDTA. I have suppositories, but never really liked them much. I've heard pills aren't that great for efficacy, either.

Methyl supplements are very beneficial for some but not all of us need methylation. Mine when tested was perfect for example despite very high fatigue - it might be it just isn't what you need. I noticed the absence of a general B complex though. Most us need at least B2 or B6 with B12. I would always take a B-complex, preferably an active one (I like jigsaw health) with B12.

Has your CQ10 always been 100mg? I found I needed to start at 100mg twice daily for about four months to get my levels back up. Are you taking lots of Vitamin C? It preserves vast numbers of antioxidants and other vitamins and helps hormone production. People vary but I need 10g/day to have an effect.

Have you had any form of tests done showing hormones, amino acids, anything else?

Leo

Click to expand...

@ Leopartail, I havn't tested for SNP's so maybe, there is no methylation problem. I had been tested according to Dr Myhill's protocol and that showed some problems with ATP production. I followed her directions during more than one and a half year without result (including 300 mg coQ10 a day for 4 months, then reducing the dose).
I have been taking a B complex (forgotten to mention it) from AOR, completed with active B2 and B3. Vitamin C is part of my regimen up to 1 gr a day (tiny dose in comparison to what you are taking though).

I am conscious my regimen is somewhat based on trail and error.
Recent testing showed positive results for Borrelia too. I remember Rich van K. writing that Lyme could be a reason why someone made no progress though taking methylation sups. That's why I deciced to follow both routes at the same time.

@Hanna, just chiming in that I never saw benefit to CoQ10 until I started methylation protocol. I've literally taken it for years on faith, including larger doses like 300mg/day for extended periods of time. It was only in the last couple months that I've ever noticed any benefit from it or high dose vitamin C.

Also worth asking is what form of CoQ10? Ubiquinol is currently the most bioavailable form. Ubiquinone (the older form) is apparently much less so, so that you have to take even bigger doses of it to see an effect. Last couple months was also the first time I'd ever mega-dosed with ubiquinol rather than ubiquinone.

Have you tried to increase the dose of methylfolate up to several mg. per day ?

I may have been unclear, but I take 1mg 3 times a day so I take at least 3mg. per day. sometimes more. Also, have you done the methylation panel from vitamin diagnostics to look at how much you are methylating ? maybe this will give you a clue if you are still undermethylating. You can also do comprehensive organic acid test that can tell you alot about what is happening. Also, do you have viral loads of anything that might be sapping your energy ? Or any type of pathogen or parasite or mold toxin.

Click to expand...

@ Vortex,
Thanks for your clear explanation.My ME/CFS began in fact with EBV infection. I have been tested positive also for Lyme recently (after 16 years). Methylation panel and comprehensive organic acid test havn't been performed. Perhaps that is what is lacking to be sure I'm on the right track.

@Hanna, just chiming in that I never saw benefit to CoQ10 until I started methylation protocol. I've literally taken it for years on faith, including larger doses like 300mg/day for extended periods of time. It was only in the last couple months that I've ever noticed any benefit from it or high dose vitamin C.

Also worth asking is what form of CoQ10? Ubiquinol is currently the most bioavailable form. Ubiquinone (the older form) is apparently much less so, so that you have to take even bigger doses of it to see an effect. Last couple months was also the first time I'd ever mega-dosed with ubiquinol rather than ubiquinone.

Click to expand...

I have been taking the ubiquinol form from the beginning... But the proof is in the pudding, and if I get so little success , I should build my supplements regimen on more reliable testing.
It is silly, but I think I tried to reduce testing because of financial burden (and bad experience of blood sent by Fedex, stucked at customs , and then spoiled) , and spent the double on supplements I am not sure are tailored for me.

I have been taking the ubiquinol form from the beginning... But the proof is in the pudding, and if I get so little success , I should build my supplements regimen on more reliable testing.
It is silly, but I think I tried to reduce testing because of financial burden (and bad experience of blood sent by Fedex, stucked at customs , and then spoiled) , and spent the double on supplements I am not sure are tailored for me.

Click to expand...

I know when I eventually had tests done it was very useful. It showed what I didn't need, revealed something things I never considered and stopped me starting a supplement that would have caused mayhem. Like you though I was very reluctant to spend money on it, but it revealed two problems I never knew I had - I am just in the process of working out how to deal with one of those problems now..

For me the Vitamin C made a massive different and I stopped craving orange juice. It made no different at low dose but produced massive reduction in inflammation, improvement in mood, and general better health with doses above 5g. I know sarah myhill's new book recommends 5g morning and 10g at night.

Which country are you in? I wondere with the fedex thing, since that vast majority of tests I would have liked are US based... The mito function tests seems to be the one example that is here.

@vortex: so how did the liposomal EDTA work? I'm getting ready to do another round of chelation and would like some options for EDTA. I have suppositories, but never really liked them much. I've heard pills aren't that great for efficacy, either.

Click to expand...

The liposomal edta worked well, much easier faster and cheaper than going to get an IV, but be careful it crosses the blood brain barrier and that might or might not be good. I did get headaches sometimes when I used too much like it drained some mineral from my brain, but overall, it was good. Unfortunately the brand I was using life enhancement stopped selling it. But I think there are others.

Can you quantify your energy levels, using Bell's Modified Disability Scale, or just where you feel you are on a scale of 0 to10, or 0 to 100? For example, if you were a 2 or 20% before, where are you now? And can you also comment on if your PEM has reduced or changed in any way.